He looked at her, alarm in his eyes. “What?”
“Maybe we should separate. If this is going to be too hard for you. I would understand that, because I know how much you love me. And if seeing me die—”
“Don’t say that!” he yelled, and Pebbles jumped off the couch with a reproachful look.
Then Josh clamped his arms over his head and sank onto the couch and just . . . fell apart. Big gulping sobs racked his body. In that moment, Lauren’s heart broke all over again. She pulled his hands away from his face and wrapped herself around him. After a second, he hugged her back so hard she could hardly get a breath in.
“Don’t leave me,” he said against her neck. “Don’t leave me. Don’t die, Lauren. Don’t leave me.”
He just kept saying that over and over.
“Oh, honey,” she whispered. “I’m so sorry.”
Being Princess Butterflies and Rainbows did put up a shield—but she was noticing that the shield was from everything. Maybe the terror was kept at bay, but nothing else was let in, either.
For months, she’d been worrying about Josh after her death. She hadn’t worried about him in the here and now, when she could actually do something about it. “I’m sorry, honey,” she said again. “I’ll do better. I won’t make jokes anymore.”
He pulled up, his hair crazy, eyes wet. “No. I . . . I know you need to. And I do, too. Just not all the time. Sometimes I need . . .” His voice broke.
“Sometimes you need to punch a wall.”
He nodded. “Sorry about that.”
“We can get a punching bag for the gym downstairs.”
He looked at the floor. “Lauren, I . . . I don’t usually . . . I call it a red-out. When I lose my shit like that. I’m sorry I scared you.”
“I understand, honey. We’re going through a lot.”
He nodded and swallowed.
This would be a process, she realized. There’d be curves and veers and long straight stretches, and that was normal. They got to be scared and furious and happy and grateful, and sometimes they could be all those things at the same time.
She climbed off his lap and handed him a tissue, then blew her own nose. They looked at each other, raw and exhausted. “Is there a way to head that off at the pass?” she asked. “You know. To save our walls?”
He nodded. “Yeah. I have techniques. Visualizations, distractions. Creative destruction.”
“Oh, I like that term. Like you go out and chop down a tree?”
“Yeah. Or hitting a punching bag. Ben had one in his basement for me.”
“Guess what you’re getting for a birthday present?”
“Is it a punching bag?” He smiled, looking older than his years, and her broken heart broke a little more.
“It is! How did you know?” She stood up, pulled him to his feet and hugged him. “I’m starving. I’m going to make us both omelets.”
He looked at her a long minute. “Are we okay? Do you forgive me?”
“Oh, Josh. Yes, honey.”
“Don’t ever mention us separating again. Okay?”
“Okay.” Then Pebbles pushed between them, and they smiled, and Josh picked her up and kissed her head.
* * *
THE CHANGES CREPT in. The diagnosis had been surreal and amorphic at first. But reality was making itself at home, and Josh’s red-out . . . it drove everything home.
There had to be time for grief and anger laced together with all that they did have, and that panoply of emotion made Lauren feel more real. She didn’t always have to be Princess Butterflies and Rainbows, and she didn’t have to be sobbing on the floor. Just because she was terminal didn’t take away from the fact that she was also a regular person.
There were the new realities of IPF. She learned to plan her day carefully, so as not to expend too much energy and have a setback. She and Josh bought a lovely teak bench for the shower, and a grab bar, in case she got dizzy or weak. Josh got her a beautiful leather bag to hold her portable oxygen, which she didn’t need every day . . . but it was nice that she had a bag that didn’t yell medical device even if she often had a plastic cannula in her nose.
College Hill was too steep for her to walk to work now. But she did walk around the Brown campus at lunch, because staying fit was important. Louise or Santino usually went with her; Louise was sharp and funny, but Santino was hilarious. He had the best stories about the women he dated—like the one he’d met for the first time, went back to her apartment and found pictures of himself taped to the fridge. Or the one who asked if he’d like to wax her lady bits as foreplay. Like most people who saw her frequently, her condition became normal to them (though Lori Cantore treated her like she was giving away gift-wrapped leprosy).
Bruce the Mighty and Beneficent had brought a twin bed into the staff lounge and made a sign that read Lauren’s sleeping, so fuck off in case she needed a nap. Lori filed a complaint (sigh), and Bruce called Lauren into his office and made her and Lori Cantore watch as he fed the complaint into the shredder. Dear, dear Bruce.
She, Sarah and Asmaa took a gentle yoga class a few times a week, which was great for keeping her muscles strong, which in turn helped her oxygenation. She went out a couple of times a month with her friends or sister, saw her mom and Stephanie at least once a week. She was planning these days, unsure of how much longer life would be normal, or if a bad flu season would force her to stay in the house for months.
Jen brought Sebastian over every Thursday night so they could babysit while Jen and Darius went out. Lauren loved those nights, Sebastian’s funny little questions about how the water got into the tub, or if elephants sleep in nests, or if he could stay with them for nine or seventeen days in a row. He’d fall asleep in their bed, and she and Josh would lie on either side of him, pretending to watch a movie but staring at his perfect skin and long lashes, curly hair and sweet little hands. Their sadness at not being able to have kids went unspoken, but when a few tears slipped down her cheeks, Josh would reach over and wipe them away and tell her he loved her.
Her medical stuff became routine—respiratory therapy, which involved huffing, pursed lips, diaphragmatic breathing, and her favorite, mucus expulsion, which was just as sexy as it sounded. She had pulmonary function tests, blood work and checkups.
The goal was to keep things steady. What lung space she had lost to the fibrosis and scarring was gone forever. Every time she got pneumonia, the therapist warned, she’d lose a little more.
Meanwhile, Josh was . . . amazing. Calm, caring, funny and, yes, sometimes sad. The punching bag was used three or four nights a week as a proactive measure, and when he came up, sweaty, his hands wrapped, his mood light, she was proud of them both. He got better at talking about those pesky feelings—she did wonder if she was the first person who’d helped him with that, since she suspected Steph had simply told him yes, life could be unfair, next question please? The wall-punching incident had loosened something in him.
“I was thinking about the Great Beyond,” she said one night over a vegetarian dinner so loaded with garlic it had cleared out her sinuses. She tried to keep her voice light, but his head snapped up.
“Are you feeling okay these days?”
“Yes! I feel great today.” She cleared her throat. “When my dad died, I thought about it a lot, that’s all. And . . . I’ve been thinking about it again.”
“I don’t want you to think about it.”
She gave him a look.
“Right. Okay. Tell me more.”
She loved him so much. “Well, I think it must be this amalgamation of everything you’ve ever loved and wanted to do. Like . . . you get to be an eagle. Or a baby giraffe.”
“Or a shark.”
“No one wants to be a shark, Josh.”
“Why? No fear, do whatever you want, eat whatever you want . . .” He attempted a smile.
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“Kill seals and unsuspecting swimmers? No. There are no sharks in the Great Beyond, Joshua.” She pretended to scowl.
“Okay. Well, what else is there?”
“You get to see all the people you love who’ve died. Obviously. I’ve got my dad, my grandparents, my great-aunt Mimi. A boy in fourth grade who had leukemia. Peter. We sat on the bus together.” She hadn’t thought of him in years. Poor little Peter. They’d held hands once. Her eyes stung.
“What else is in the Great Beyond?” Josh asked. “Food, I imagine.”
“A make-your-own-sundae bar for sure.”
“How about that sushi place we went to in Hawaii? That’s worthy of the GB.”
She smiled, feeling her shoulders drop a little. Her ending was part of their life now. And she was scared . . . not so much of dying herself, but of making everyone she loved so sad. And yes, of course of dying. Dying badly, that was. Would she go out gasping with air hunger, that wretched term? Clawing at the sheets? Or intubated and drugged so she couldn’t say some profoundly moving last words?
“I really believe my dad will be there at the end,” she said, and then she did cry.
Josh came over and picked her up and held her on his lap. He kissed her cheek and smoothed her hair and said, “Don’t be such a loser, babe,” and she sputtered in surprise, then laughed.
Thank God for him. Thank God.
Being married to a sick person got Josh a lot of attention from idiot acquaintances and, alas, her mother. “You’re a saint, Josh. I don’t know how you do it,” her mom said one day when she insisted on coming to a doctor’s appointment. Lauren was having her blood drawn to check her arterial gases.
“I’m actually sleeping with Tyler here,” Josh said, nodding solemnly at the phlebotomist. “Best sex of my life.”
Her mom gasped, and then, realizing it was a joke as Lauren laughed (and coughed), glared at Josh.
“I don’t like to brag,” said Tyler, “but I do have a reputation.”
“I feel neglected,” Lauren said. “I’ve never slept with you, Tyler.”
“Text me,” he said with a wink. “Hold the gauze, you know the drill, and voilà! Get out. Go. Leave me.”
“Maybe he can be your next true love,” Lauren said to Josh.
“I could do a lot worse.”
“It’s not funny,” her mom said. “First, my husband drops dead, and now my daughter is dying.”
“Thanks for the reminder,” Lauren said. “Can we get Thai food? You want to come, Mom?” Because even if her mother was a little black rain cloud, she was still her mother. “Let’s call Steph and see if she can come.” Her mom was better behaved when there was a more functional peer around.
Lauren also found that she’d become inspiration porn . . . that too many people bent over backward to praise her for simply being alive. Her social media accounts were suddenly burgeoning with compliments about her boring photos of food and trees. Mean Debi was the worst. You’re amazing! You can do anything! Keep up the good work! #prayers #LaurenStrong. (Not that she came by or made a casserole or anything.)
Only Jen, Sarah and Asmaa stayed sane . . . Sarah even going so far as to post yawn when Lauren posted yet another picture of the sky at sunset. Lauren appreciated that.
She didn’t want to be known as Dying Lauren or Terribly Sick Lauren. She didn’t want to start a YouTube channel or a foundation (though huge props to those who did, because Lauren would occasionally watch those videos for a lift). She didn’t want to document her illness . . . she wanted to think about living. Yes, IPF was a big part of it now, but there was no way she was going to post pictures of herself on oxygen to “inspire” anyone. To quote the great philosopher, ain’t no one got time for that.
She did start a Twitter account under @NotDeadYet0612 with an avatar of a skeleton smoking a cigarette. The purpose was to document stupid things people said, because if you couldn’t laugh at them, you might become homicidal. She became quite popular, reporting from the trenches.
Stranger at my doctor’s office asked what I have. Her reaction: “Oh, my God, my cousin’s other grandfather? He had the same thing. It was awful. He wasted down to nothing. He didn’t even look human in the end. He reeked of death.”
Me: “That’s so reassuring. Thank you.”
Some dude on a conference call, asking about my cannula: “Well, we’re all dying, really. I could get hit by a bus crossing the street!” How many people actually die this way? Are bus drivers filled with road rage? Why not say “car” or “dump truck”? Poor bus drivers get a bad rap.
Lady in post office when I am innocently mailing a package: “I see that you’re on oxygen. Are you sick?”
Me: “No, I just like the buzz.”
Her: “Can I hug you?’
Me: “No.”
Her: “Let me hug you.”
Me: “You touch me, and I’ll punch you.”
She and Sarah laughed till they cried over that one, and it became their catchphrase . . . let me hug you. Never failed to make them giggle. Asmaa, who was sweeter than both of them put together, never got the joke and hugged Lauren every time she heard the line, which just made it funnier.
So she had a terminal condition. Didn’t everyone? Everyone would die, after all. Lauren’s death was just a little more real than getting hit by a bus.
She could live with that. She was living with that. She didn’t have much choice.
17
Joshua
Month five
July
HE’D STARTED WORKING again, almost every day. Better to do something that might help someone somewhere than watch television. It wasn’t easy to concentrate, and his brain would play small, cruel tricks on him. If he finished this phase of the design or read an article about that subject, Lauren would come back. If he could work for an hour, Lauren would come back. If he was just good enough, time would flow backward, and Lauren would be back. Sometimes he thought he heard her at the door or in the kitchen, and he spooled out the notion. Yes, she was back. No, it wasn’t the AC clicking on. It was his wife. The past four and a half months had been a bad, excruciatingly detailed dream.
One night, he’d set out her favorite mug next to his. Just to see them together again. Just to pretend for a few seconds that she’d be in this kitchen once more. Even if it was her ghost—and he didn’t believe in ghosts. Anything. Anything from her.
There was nothing.
He answered texts and emails and sometimes even the phone. He took Pebbles for a run in the morning, a walk at lunchtime, and, most nights, a romp in the dog park. If a person asked what her name and breed was, he’d answer. Every Tuesday and Thursday afternoon, he went to karate, which was actually pretty fun. Being around five-year-olds with badass attitudes let him escape a little bit. He and Ben resumed their long, rambling walks. Ben had a soft spot for Pebbles and loved throwing her the Frisbee, which Pebbles could catch in midair.
“How are you doing, son?” Ben asked.
“Doing okay.” Somehow, those brief talks helped. He guessed it was just knowing Ben was with him that did the trick. They had never needed a lot of words, after all.
The anger would come in red flashes. He lost his car keys one day and tossed the apartment like a DEA agent looking for meth, knowing as he flipped the couch cushions and slammed drawers and barked out curse words that he was overreacting (and would be the one to clean the mess up later). His car didn’t start one day, and he kicked it so hard it dented. When his shirt got caught against a chain-link fence during a run, he tugged it, tore it, and then ripped the whole shirt off and split it in half, then tossed it in the trash.
It wasn’t the shirt, or the car battery, or the keys. It was one more thing, no matter how small, that he had to deal with. The rage was sickening and satisfying—he’d never kicked a car before, for God’s sake, and what good did it d
o? That thought hadn’t stopped him from kicking it over and over. The punching bag in the first-floor gym was earning its keep. If his little karate compadres could see him then, they’d be terrified.
Anger was one of the stages of grief, he knew. It made him feel huge and sick and even a little scared of himself, and when it passed, he was ashamed. “It’ll get better,” his mother said, staring at his now-calloused, reddened knuckles. “I know it doesn’t seem like it, but it’ll get easier, honey.”
He didn’t see how that was possible. Lauren had been the center of everything, it seemed, and now instead of her, there was a black hole with ragged, sharp teeth, gnawing at everyone who loved her, eating them like a snake eats a hapless field mouse, in gulps and fits.
Radley, his first post-Lauren friend, was a relief by comparison. He was often free, leading Josh to believe that either Radley didn’t have many friends either, or he was using Josh as a guinea pig for therapist training. Either way, he was grateful, because there were days when it felt like he didn’t really exist. That, were it not for a text from Jen here and an invitation from Radley there, Josh felt like he might not be . . . real, somehow. He talked out loud from time to time just to make sure he still had a voice. Pebbles would lift her head and wag, or come over and sit close to him, pressing herself against his legs.
He was so glad he had a dog.
The forum said everything was normal. Others understood and commiserated. It didn’t make the problems go away.
One day, Josh was contacted by Chiron Medical Enterprises, a company based in Singapore who’d bought one of his designs. They wanted a device that would help spinal surgeons detect different tissue types in the back to alleviate human error when inserting hardware, limiting damage to soft tissues and especially the spinal cord. It was a good project, complicated but with far-reaching benefits, right up his alley.
The more he sat at the computer, the easier it became to think about the job. His tunnel vision returned, the thought process that had allowed him to succeed so early in life.
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